Do not pray for tasks equal to your powers;
Pray for powers equal to your tasks,
Then the doing of your work shall be no miracle,
But you shall be the miracle.
Phillip Brooks
Trials and tribulations, an integral part of our sojourn in mortality, have been allowed by an all-wise Father in Heaven to facilitate our growth and progress and to stir us up in remembrance of Him. Even though we understand that these experiences can be for our good, they nevertheless impact our lives and families in challenging ways. Sometimes the test comes through a personal affliction or it may be through the suffering of others. Included herein are stories of three mothers and how they have met their children’s special needs.
Jay was born with a rare disease that affected his muscles and caused them not to develop. This complete lack of muscle mass kept him from doing anything for himself. His parents would even get up several times each night to turn him to prevent bedsores. As Jay became of age he was ordained a deacon in the Aaronic Priesthood. His great desire was to pass the sacrament. And he did.
No one in their ward will ever forget the day Jay’s father took his son’s frail little body of skin and bones in one arm, and with the sacrament tray in the other hand, walked up and down the aisles of the chapel passing the bread and water.
Jay’s story is just one example of countless instances of the tender loving care goodly parents bestow on their children who have disabilities.
Many families have a member who is disabled in one form or another. How do these parents encourage their other children to be cooperative and helpful rather than to think they are being neglected and feel resentment toward the sibling who requires so much of the parents’ time and attention? How do these parents keep the household functioning satisfactorily in spite of exceptionally heavy demands and constant needs of a child? How does such a situation affect family life?
Parents of children who are disabled readily agree that generalities are not very useful because each situation is unique and circumstances vary widely. So much depends on the nature of the person’s disability and the level of his competence, his age, the family constellation, and many other individual circumstances. What works for one family may not be applicable for another.
Carmen, mother of Brian, who has autism, says, “Raising a child with a disability is not a simple, easy task. Rather it is a lifelong commitment that can push a parent to the very edge of endurance. Every stage of the child’s development presents an entirely new set of challenges.”
“It is like raising a child in slow motion,” says Betty, whose son, David, has Down’s syndrome. “However, the Lord sends a lot of love with these children. We feel we have been very blessed, but in a different way than we would have expected.”
Both Carmen and Betty express gratitude for the eternal perspective that is theirs through the gospel of Jesus Christ. Nevertheless, they say it does help to talk with others who have a family member with a disability. Through such discussions they feel support, they gain strength, they renew their resolve, and they broaden their perspective. It is also a means whereby they can be of service to others in similar situations. It is within this context that they have shared the following regarding their sons, Brian and David.
Communicate, communicate, communicate. “As we watched our toddler, Brian, develop,” Carmen explains, “we grew uneasy with his unusual behavior. In spite of his well-formed body and flawless features, we gradually came to realize that something was wrong. After a long search, we discovered that Brian had autism.
“We discussed the situation with the children, saying, ‘It could have been you. Or it could have been you,’ We pointed out what some of Brian’s lifelong needs would be and said, ‘If it were you, we would help you just as we’re going to help Brian.’ The children understood. Instead of adding to the problem, each one became part of the solution. We were all in this together.
“When Brian was nine,” Carmen relates, “he and I went to California where he participated in some testing. On the way home the plane was delayed on the tarmac due to mechanical problems. Brian became extremely restless and irritable as we waited. He wanted the plane to ‘go.’ There was nothing I, as his mother, could do about his screaming tantrum, which caused the other passengers to be quite irate. So I stood up in the aisle and announced in a loud voice, ‘Ladies and gentleman, I’m sorry my son is disturbing you, but he has a neurological disorder and cannot help himself. Please be patient and understanding. If you’ll just ignore him and go back to reading your newspapers, he’ll soon settle down.’ Immediately their disgust turned to understanding and kindness. I realized, once again, that one’s judgment is no better than one’s information.
“There was plenty of embarrassment over public behavior, but no shame or secrecy. We tried to be open and honest with everyone. For Brian’s protection, we talked about him in the community. The Lord usually helps us and answers our prayers through other people. If they do not know about our needs how can they bless our lives? How can they help if they don’t understand?”
Make it a family effort. Carmen says, “A special therapist was invited to our home to talk to our children about what to anticipate from Brian, how to react, what to do, and how best they could help. In response, one brother quickly offered to teach Brian to brush his teeth. Another volunteered to assist him in dressing. One said he would teach Brian how to use a fork at the table. The therapist explained that Brian needed help with some sounds in his speech. His five-and-a-half-year-old sister jumped at the chance to assist in this way and immediately set to work making flash cards. His speech did improve, so she then taught him some simple math. She became quite creative in using little rewards to keep him motivated. Through the years the children taught Brian to do his chores and included him in their circle of friends.
“The children took on added responsibility about the house and yard, thus freeing us as parents to spend as much time as possible with Brian. His brothers worked with Brian in his Scouting pursuits, assisting him in earning merit badges, riding with him on his fifty-mile bike trip, and attending a Scout camp with him. It was a victory for the entire family when Brian became an Eagle Scout.”
Betty, whose son has Down’s syndrome, tells of their situation by saying, “The older children were assigned to spend a period of time to keep David with them while playing outside. His younger sister and brother became his playmates in the house.
“David learned to do simple household tasks by watching his siblings. Now at age forty-one, he takes his turn with the kitchen cleanup, he keeps his room clean and neat, and he does other chores about the house. He loves keeping things in order and does so without even being asked.
He is very dependable.”
Family support and help have been extended over the years, even to the extent that the siblings of both Brian and David have assumed responsibility for their brothers for a period of time, making it possible for their parents to fulfill missions. Many sacrifices were made, but both families feel those sacrifices were far outweighed by the blessings.
“My sister lives across the street from me, and she has literally saved my life,” Betty gratefully acknowledges. “My sister has always been willing to tend David for me, and when you have a ‘forever child,’ such help is invaluable. She would even take David overnight occasionally so Frank and I could get away. My other sisters as well as my parents were very helpful and supportive, but they live farther away.”
Betty admits there have been moments of stress in their marriage over discipline methods, especially early on in David’s life, but she says understanding the gospel helped lighten things up as well as enabling them to focus on the eternal perspective.
She says, “Frank traveled a lot before he retired, and sometimes I felt very much alone, but he called me every night to hear about my day. When he is home, he gives a hundred percent. He came from a very loving family, and so he in turn gives lots of love to our David. We ski as a family, and that has been a great activity for us.”
Encourage each family member to be part of the solution. Carmen says, “There was no appropriate program for educating Brian and other children with autism, so I started to work with the Utah State legislators to bring this about. The children stepped up to help at home, adding dinner preparations to their list of chores.
“Once, when it appeared that the funding was going to be cut, we took all the children to testify before the legislature in behalf of Brian and autism. They did a remarkable job in presenting their case. The funding remained in place.”
Do your best to give adequate time, attention, and support to all your children. “One of the best things we did as parents,” Carmen recommends, “was to have ‘talk time’ with each child individually at bedtime. One of us listened to each child’s report of the day, we gave specific praise for things well done that day, and we expressed our love. As the children grew older, we used the family ‘team approach’ of supporting each child in music recitals, athletic events, school campaigns, and so forth. In this way, Brian was not the only one receiving the support of the entire family.
“We looked for opportunities to have a little one-on-one time with each child as circumstances permitted, even if it was just taking a child along on a Saturday errand. All these things seemed to prevent the children from developing any resentment toward their brother who required special attention.”
Take advantage of outside resources. “We gained the cooperation and understanding of the bishop and our ward leaders and teachers,” Carmen says with much appreciation. “Many people came forward to lend support, understanding, and assistance. One ward member’s calling was to help Brian while we were in the mission field. That was a wonderful service to us.”
Model the feelings and expectations you want to see reflected in your family and among others. Betty asserts, “If you as parents do not resent the situation, others will not either. We’ve found it helps people to be comfortable if right away we acknowledge David’s situation and express positive feelings.
“Once years ago,” Betty recalls, “we took David to the grocery store with us, and our other children expressed concern because people seemed to be staring at him. So I just asked the children, ‘Wouldn’t you stare, too?’ They thought for a minute and then nodded their heads in understanding. Since then they have not been embarrassed in public by David.”
Carmen adds, “The children felt okay about Brian and consequently their friends did as well. Brian was welcome to join them in many of their activities. Although it was not always easy to have Brian around, he was their brother and friend. Each one involved learned to be more patient, less judgmental, and more compassionate. They became better human beings.
“The children’s writing assignments in school often featured Brian as the subject of their papers. One of their friends took Brian to a school dance. Another one became his peer tutor and spent many hours at his side helping him with his homework.”
Let your child serve according to his or her abilities. Depending upon the level of development and ability and with a great deal of assistance from family and friends, people with disabilities can participate in various activities and serve in meaningful ways. Some of the opportunities include holding down jobs, becoming involved in community service projects, and participating in the Special Olympics program. Young men can find fulfillment by functioning in the offices of the Aaronic Priesthood and by serving as home teaching companions. Young women can serve in such capacities as visiting teaching partners and team teachers in Sunday School or by just being greeters at the door in Relief Society. Full-time missions are also open to some.
“It was Brian’s desire to serve a mission” Carmen says. “Family and friends rejoiced when this opportunity was extended to him, and he was called to be a gardener’s assistant at Temple Square. Brian was thrilled to have his picture in the foyer of the ward building just as his brothers had had. He fulfilled an honorable mission, and it was a grateful moment for everyone concerned as Brian reported in sacrament meeting at the conclusion of his special service.”
Do not let what you cannot do interfere with what you can do.
John Wooden
Betty talks about David’s mission by saying, “He received a mission call to serve at an LDS seminary for young people with special needs. His assignment was to push wheelchairs between the building and the school, and to assist the teachers and secretary in any way that would help them. He dressed as a missionary and proudly wore his badge. He loved his mission so much that it was extended for a second year.”
As caregivers, develop interests that help you to “get outside” the challenges for short periods of time. “My interests and talents in music and art helped me keep my sanity,” admits Betty. “I sang with the Allegro Chorus for thirty-two years. The music lifted my spirits, and even though I haven’t sung for ten years, some of the women I met are still among my dearest friends. I also sew and paint and do crafts. I taught decorative painting for nearly ten years in my home. I have specialized in creating Santas from pine logs or aspen wood which I sell at an annual boutique each year before Christmas. These projects have brought me lots of personal satisfaction and have strengthened my feelings of self-worth.”
Become active in community efforts to help with the disabled. Carmen encourages others when she says, “Leadership and organizational skills learned in church service are welcomed by the community and can aid people in making important contributions.
” Carmen, herself, is certainly an outstanding example of doing this. Her efforts to instigate a program whereby children with autism can receive training and education have resulted in a school being built for this purpose in Salt Lake City. In spite of her protests, the school bears her name. The Carmen B. Pingree School for Children with Autism blesses the lives of dozens of children with this disability.
Face hard decisions when necessary. Carmen offers, “Despite a family’s best efforts, a disability can be so severe that it becomes necessary to find an appropriate placement for the child outside the home. Having to do this can be a traumatic experience for the family. Only the family and the Lord really know the difficult details of the situation and can understand the need for such a decision. At such times others can help by showing their loving support and sharing their testimonies of Heavenly Father’s eternal plan of happiness.” Carmen adds a comforting scriptural passage to her comment when she quotes, “Ye cannot behold with your natural eyes, for the present time, the design of your God concerning those things which shall come hereafter, and the glory which shall follow after much tribulation” (D&C 58:4).
Every burden on the back can be a gift in the hand.
Elaine Cannon
“Our experiences with David have united us as a family,” Betty testifies, “and helped us to be less judgmental and more compassionate than we otherwise might have been. David has made us better people. For example, we can never raise our voices because doing so is terribly upsetting to him. His spirit seems to be offended.”
Gain an eternal perspective. “When Brian received his patriarchal blessing, arrangements were made for the entire family to be present,” Carmen relates. “It helped everyone understand who Brian is and what his eternal nature is.
“When Brian was young we worried about how we would ever teach him such abstract concepts as faith in God or how to recognize the Spirit. For Brian, his world needed to be concrete. But to him spiritual matters were concrete. When he failed to mind us, we could get his attention and cooperation by quoting from the scriptures. He regarded the scriptures with reverence and awe. He sensed the meaning of prayer. He prayed as though he was just talking with his Father in Heaven. One evening, right in the middle of his prayer he asked, ‘And how do you like my new goldfish?’ There have been impressive instances when he recognized that his prayers had been answered, and when he received pure intelligence from a loving Heavenly Father. These experiences provided great teaching moments for our family. We knew his spirit was whole and we realized who he really is, a beloved child of God.”
“The fact that he is a precious soul shines through David,” Betty says with deep emotion. “He has been shielded from the problems and temptations of the world and will return home to his Father in Heaven just as pure as he came.”
To Carmen, Betty, and parents and families everywhere who have been called upon to protect and nurture these special children, we salute you for your patience, endurance, faith in the Lord and his Plan, and for the true love of Christ you exemplify. You have inspired and taught us. We, too, are better people, less inclined judge and more likely to be kind, because of you.
In Alma 36:3 we read, “I do know that whosoever shall put their trust in God shall be supported in their trials, and their troubles, and their afflictions, and shall be lifted up at the last day.” With you, we look forward to a time when we will know these choice people with afflictions for the great souls they are.
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Daryl Hoole, mother of eight, is a best-selling author and popular lecturer on home management. Now retired, she enjoys free lance writing. She is answering questions from readers who contact her at as*@th****************.com . Her “At Home” column appears every four weeks on Mondays on Meridian Magazine. This information is also available on her personal website at www.theartofhomemaking.com .